ALS anxiety as a past CALs.

[Marnes77]

Hi all.

I hope everyone is doing as well as they can.

My PALs passed last October just 9 months after DX.

Obviously I am grieving deeply. Lately I have developed what look and feel like fasiculations in various parts of my body (I am very familiar with them due to my partner). Sometimes they are so strong they cause a jerk.

This of course is giving me anxiety that ALS is coming for me too. Even though I know the odds are low.

It is likely more a function of grief, perhaps something psychosomatic, and lifestyle factors.

Just wondering if anyone else has experienced similar...? It's very strange.

Best,
Marnes

 

[Mary2]

Marnes, I am sorry you are having the fasiculations. I hope they aren't painful. I have not experienced anything physical like that. I do stay hydrated. A quick internet search seems to indicate they can be caused by stress, but other illnesses like MS would need to be ruled out first. Any plans to see the doctor? Are you sleeping okay. A quick read says lack of sleep can cause them. I am using the CALM app to sleep. It is very helpful.

 

[lgelb]

I haven't experienced widespread fascics, Marnes, but twitch sometimes like everyone else, especially when tired or dehydrated. Fortunately, widespread fascics and no other significant issues argue strongly against ALS.

It can be hard to accept health and happiness in the face of your loss, even with your family to think of. Being forced onto a fork in the road that you never imagined puts a lot of strain on your body, and ultimately, when something reaches a fine point, expresses itself in very real ways.

I don't know who or what could help you rechannel the restlessness of sadness, but it can be good to find new or rekindled ways to spend some time. It's a kind of cue for your mind and body -- not to "move on," which makes no sense, but to "move sideways" off a path that has become a bit too deep.

 

[Marnes77]

Hi both,

Thanks so much for your kind and considered replies.

I am lying on my bed here twitching away. They are widespread, and no weakness or anything, so hopefully not a major concern.

I tend to think it is lifestyle - stress, sleeplessness, dehydration, one too many glasses of wine now and then - all that lovely griefy stuff.

I am also on antidepressants that I just researched and can cause them quite commonly.

I do wonder if there is some sort of psychological aspect too. Phantom fasics, or sympathy fasics. The mind body connection works in mysterious ways.

Lately my grief has become all about my partner and what he went through and all he is missing, rather than my own loss, or our combined loss, if that makes sense. I see everything through his eyes now, and my heart just breaks for him.

I am haunted by the final choice he made and those final moments too. As he travelled to do things his way.

Obviously my grief was for him before too. But now it's 100% all about him. Grief really is quite the unpredictable journey.

I will keep an eye on things anyway and see how it goes. The antidepressants are being reduced over time, so that could make a difference. I will see the doctor if my anxiety about this rises or any other symptoms present.

It's hard not to expect the worst when you have lived the worst.

Lots of love and thanks again,
Martha